Being grateful

One song I enjoy running to is Kelly Clarkson's "What Doesn't Kill You Makes You Stronger."  I've always believed that to be true in life. Each situation we face makes us adapt, change and grow to deal with and, hopefully, overcome it.

I spent several years working with an birth education and advocacy group, The International Cesarean Awareness Network (ICAN). My involvement grew out of my own bad experience with Olivier's cesearan birth in 1999. As I became more aware of the physiological and political issues surrounding the birth industry, I was able to go on to have two amazing home births with Isabelle and Jean-Marc. I got involved in ICAN, a group that I found much support and information from during my subsequent pregnancies. I like to think that I helped other women avoid some of the same mistakes that I made the first time around. My cesarean experience definitely made me stronger, but it took me a long time to get to the point of saying that I was grateful for that experience. But now, I can honestly say that I am grateful for my cesarean and for the person it forced me to become.

A new friend, (who found me through this blog), mentioned an interview with "Soul Surfer" Bethany Hamilton. Bethany was asked if she could do her life over, would she have not gone surfing that day or gotten out of the water before the shark came?  And she said, "No", because she has been able to reach so many more people to tell them about her faith and God's love than she ever would have if she'd remained a normal surfer girl.

That got me to thinking...will I ever be able to say that I am grateful for my cancer? Maybe not grateful, but would I ever wish that it didn't happen to me if I could have it all to do over?

Honestly, I don't know right now. Sometimes I look back on what I went through and it doesn't even seem real. Did that really happen to me?  It doesn't take long before I have a glance in the mirror and see my scarred body to confirm that, yes, it did.

If it weren't for the lingering specter of recurrence, I probably could get to the point of being grateful someday. Even with the lymphedema that will always be an issue in my life, I could probably get to that point.  But the thought of the cancer coming back at any time really plays games with your head, because its never really over.

That being said, I can think of some things that I appreciate having gone through cancer and treatment that I would not have necessarily experienced if I did not have the experience.  First of all, I have been able to experience the love, care and keeping of God in a way I never had before. It was experiential at times. It was palpable. I think of my biopsy or my surgery, when I could actually feel the presence of the Lord with me, keeping me, whispering scripture into my mind to bring me peace and calm.

I learned through experience that God's promises in the Bible are true. Things like, "I will not leave you or forsake you." (Hebrews 13:5-6) Or the promise from Joshua 1:9 that I wore on a necklace to every chemotherapy appointment: "Be strong and courageous, do not be afraid, do not be discouraged, for the Lord your God is with you wherever you go." Even simple things like being able to sleep at night because "He gives to His beloved sleep." (Psalm 127:2)  I KNOW these things are true because He did them for me. Based on that, I can rest assured that the rest of the promises in the  Bible are true as well.  (Which really puts one in a place of peace during these crazy times.)  Even if the cancer comes back and is what ultimately makes this body die, I know based on the promises in His Word where I'll be, because "to be absent from the body is to be present with the Lord." (2 Corinthians 5:8)

Another thing I appreciate is the fellowship of other breast cancer survivors. What an amazing bunch of people they are!  Most of them not only have or are going through treatment, but they all try to help others in some way. Many do help through participating in walks or events and raising money for cancer charities. Others have informative blogs, or give back by volunteering to help run support groups and working one on one with women as they go through treatment.  We don't all see eye to eye on all issues related to breast cancer, treatment, pink ribbons, etc. But we all respect each other's experience and I always feel a genuine warmth from all of them.

Having had breast cancer has certainly put the women in my family on alert, as well as many of my friends and acquaintances. If it could happen to me at 40, it can happen to anyone.  Hopefully this heightened awareness will lead every woman to check her breasts regularly, know what they feel like, know what is normal so if there are any changes, she can alert her care providers immediately. I believe that is even more important than mammograms. (Remember...I had a "clean" mammogram a month before I was diagnosed with Stage 3 cancer!)

While I will never reach the celebrity of Bethany Hamilton, I hope that my experience has reached out and helped others. I hope that people can see evidence of God's love through my experience and be strengthened in their own faith.

So while I am not "grateful" that I had cancer, I am beginning to see how God has used it for good purposes.  I know that He works all things together for the good (Romans 28:8).  I pray that this list of things that I have come to appreciate grows as I reflect on the past 25 months and move forward in my "post-cancer" life.

Take home points

I had the pleasure of sharing some of my testimony yesterday at a Women's breakfast at Calvary Chapel of Escondido. In preparing for my talk, I went through this blog and re-lived my journey with cancer.  It was very good for me to step back and look at this experience in a compressed period of time. There were three main "take home" points that I shared with the ladies.  Since most of my readers were not present, I would like to share them here. Plus, I kind of ran over time (okay, by a lot...like 30 minutes!) I am going to expand on what I actually said so it may make more sense.

Keep in mind my entire story as you read this. It may sound flippant if taken out of context. But I've come to this after a longish road of trial and walking the walk. I continue to be concerned that it is not really over. I live in persistent concern (I don't want to use the word "fear") of recurrence. This is what I've learned so far:

YOU CAN BE JOYFUL, EVEN WHEN IT HURTS
"Joy" is not dependent on your relative circumstances. Joy does not come from having things, or being comfortable. Sure, it can make you momentarily happy. But a deep, abiding joy only comes from knowing the Lord. It's hard to describe if you don't have that. But even in the midst of cancer, in my darkest moments, I can say that I had the joy of the Lord. Not even cancer could take that away from me. In fact, having cancer actually made me realize what a gift I have been given in Christ. That the Creator of the universe, my Lord, has been by my side helping me get through this entire ordeal. Maybe some would be angry that God let them get cancer in the first place.  Honestly, I've never thought this way. Trials happen to everyone. I see this as an opportunity to be refined. Yes, it hurts. But I am being brought closer to my Lord. I can find joy in that.

So how can you find joy when you are in the middle of something really hard? When I was having a difficult time during treatment, I found it very helpful to count my blessings. Yes, I know that sounds corny. But it worked. Here was my list from about a year ago, when I was in the middle of chemo:

I'm thankful that:

• I found the lump under my arm when I did. 
• My family supported me throughout this trial.
• I have a wonderful family in Christ that has lifted me up in prayer continually
• The advancements in breast cancer treatment make a diagnosis not necessarily a death sentence. I'm also thankful that I have access to treatment.
• That I am the one with cancer, and not one of my kids.
• For having the Lord by my side at all times, giving me the strength to press on.

What if the worst was to happen? What if I die from cancer? I know where I am going-I'll be with Jesus in glory. While the temporary separation from my loved ones would be hard, ultimately the ones I love that also are in Christ will be with me for eternity. We can't even conceive of how amazing this is going to be!

BE READY
I did not know that cancer was coming. But God did. He knew all about it before I was even born. We all will face various trials in our lives. They may be physical, spiritual, or mental. We need to be strong physically and spiritually so that we can meet these trials head-on.  We need to be good stewards of what He has given us.

In my case, I am so thankful that God planted the desire to get into physical shape before my diagnosis. I was at the strongest I've ever been in my life when I was diagnosed. Having that outlet of exercise has not only been good for my prognosis, but helped me get through treatment. It would have been a much different story if I was not in shape at the outset.

So why not make efforts to be healthier now?  It can't hurt. Exercise helps with a range of physical problems. It also helps prevent so many health issues. God made our bodies to move and exert themselves. Our lifestyle in modern America has made it so we don't have to move much to provide for our immediate needs. Unfortunately, in so doing, we aren't providing for our bodies' need for movement. I urge everyone to do what they can to get some exercise every day.  Eat more vegetables. Eat less processed food. Cut out sodas. Eat organic as much as you can, especially the "dirty dozen" fruits and vegetables that have the most pesticide residues on them.

You don't know what is coming your way. It could be a physical trial, like cancer. Or it could be spiritual one. Be a good steward of your body and be in God's Word. No matter what, it will equip you for whatever is coming. God willing, nothing "bad" will happen. In that case, you will still feel better and be stronger and healthier than you were before.

GOD WILL NOT PUT A TRIAL IN YOUR PATH THAT HE WILL NOT EQUIP YOU FOR AND EMPOWER YOU TO SEE THROUGH
God knew this was coming and He got me ready beforehand. He "flipped the switch" in my heart to want to lose weight and get into shape. We made changes in our insurance coverage just a month before my diagnosis that were more advantageous to us financially to pay for my treatment. Even Eric took it upon himself in the year before my diagnosis to learn about cancer.

I made it through my treatment fairly well. Yes, there were hard times. I don't want to make light of it and make it sound like it was a breeze. It wasn't. It hurt. It was hard. But I made it through.

Here's the thing. It had nothing to do with me. It had EVERYTHING to do with the Lord. HE is the one that showered me with blessing and grace. It was all HIM. The Bible says, "My grace is sufficient for you. My power is made perfect in your weakness." (2 Corinthians 12:9)

I'm in awe of how God has worked in my life in the past 18 months. I don't believe in luck or coincidence.

In the end, there are higher purposes at work in everything. God promises that He will work out ALL things for the good of those who love Him and are called according to His purposes. (Romans 8:28)  In my cancer, there are purposes in all of this that He wants. Those that are for my own good. To make me better, more like Him. I don't understand what these are, nor should I. His ways are higher than mine.  All I can do is trust in Him. I've experienced His love and grace throughout this time to know that He is for real. How can I not trust the rest of what He has promised? He has not failed me yet, nor will He.

You just never know

We traveled back home from France yesterday. Paris to Dallas was 10 hours, then from Dallas to San Diego was another 2 1/2.  Needless to say, by the time we did the first leg of the trip, waited in an excruciatingly long line at immigration, went through secondary customs (thanks to the confit of duck that my mother in law gave us), went through security in Dallas and finally got on our airplane, we were pretty wiped out. We didn't have very good seats-we were all split up for one thing. Olivier was in row 17 by himself. He probably didn't mind that because it put some needed space between him and his 3 year old brother. Eric and Isabelle were in the very last row that did not recline. Jean-Marc and I were one row in front and across the isle. We were right next to the engines. At that point, it didn't really matter. Although I got to be the sole parent on "potty duty" with Jean-Marc.

Anyway, as the flight attendant served me a ginger ale, she saw my compression sleeve and gauntlet. She asked me if I had lymphedema in my arm, to which I sighed, "yes."  But it did raise a flag for me. Someone who knows what that is probably has some connection to breast cancer.  On my next foray to the bathroom with Jean-Marc, she was standing there at the back of the plane. As we exited, she asked me if I had had (past tense) breast cancer. To which I again sighed, "yes."

As it turned out, she also is a survivor. Bing, bing bing!  Immediate connection with a total stranger. Of course, we got to talking. As it turned out, we had a lot in common.  She was also 40 when diagnosed, although now she is 5 years out. She also had an almost 2 year old when diagnosed.  Her tumor was over 5 centimeters, but she only had 3 lymph nodes involved. Like me, she opted for a bilateral mastectomy.  We compared notes on chemo. She had adriamyicn as well as two other drugs that she didn't name. I'm assuming they were the same I had, since Adriamycin-Taxotere-Cytoxan is a pretty common combo.  She chose expanders for her reconstruction and said it really hurt a lot. Besides, her nipples are all misaligned and as she put it, "Playboy won't be calling me for any photo shoots."  For me, that was reassurance that my decision not to reconstruct is a good one for me.

We talked about our common fear of reccurence. Her cancer was not estrogen receptor positive, so she was not given tamoxifen. Her understanding is that her type of cancer has a higher recurrence rate.  Even at 5 years out, she is still thinking about it. I think we always will.  I told her what my oncologist said about recurrence:  "If it comes back, it isn't going to be curable."  She nodded and said quietly, "Yes. That would be Stage IV."

Despite my fatigue, it was really good to talk with her. Someone who really got it.  We share a bond that we would rather never have, I'm sure. This thought also struck me, though.  With breast cancer rates as high as they are. The chances of there being others that I share this bond with in a large group of people are very high. You just never know who that woman is. It might be the person standing right next to you, or serving you ginger ale on an airplane.

Notable day

We learn really early on what dates are important to us. As kids, we live for that one special day that is "our" day...our birthday! Even Jean-Marc has been talking a lot lately in his cute little voice about "Joo-lye" and how he will be "free."  (Translation-he will be three in July).  It's cute.  As we get older, other dates become important to us: our wedding anniversary; children's birthdays; etc. 

Today I observe a new notable date in my life.  It was one year ago today (June 11) that I was informed of my diagnosis with breast cancer. It's my "cancerversary."  This year, I don't feel like celebrating, although in a way I suppose I celebrate the fact that I am still around. I'm a survivor, right?  

More than anything else, it has made me reflect on those early days.  I had my biopsy on a Monday morning and had to wait until Friday midday to get "the call."  I'm a telephone note taker. Having practiced family law for several years and getting calls from clients, I'm in the habit of taking notes while someone is talking to me on the phone. In practice, I would usually use those notes to draft declarations or other court documents. Last June 11th, as the Kaiser breast cancer nurse "Judy" told me the bad news, I just started writing down words I was hearing. It didn't all make sense, I could figure it out later. But I got the point. I had breast cancer, I would need surgery and chemo, I would lose my  hair. 

I still remember what I was wearing that day. I hung up the phone and looked at Eric, who was in the room with me. "It's not good news," I told him. He let out a strange mix of a gasp, scream and cry and rushed over to give me a hug. I didn't cry, though.  I had gone into steely-eyed survival mode. I didn't even welcome the hug. In fact, I may have even pushed him away a little.  I tried calling my mom, but she wasn't home.  I went upstairs and did what I had planned to do all day--my Jillian Michael's level 3 circuit workout. If you've seen Jillian on "The Biggest Loser" you have seen her train contestants to a point of exhaustion to where they can break through emotionally and process stuff.  I kind of got to that point by the end and let myself cry as I was stretching out.  But that wasn't going to do me any good, so it didn't last long. 

I came back down and called my mom.  This time, she answered. I don't remember much about that call, except that I really fought the tears then. I could only imagine how difficult it would be to hear that your child was facing something like cancer. I felt guilty to be bringing on such bad news to the family. Hearing the effect it had on her through her voice was really hard. We were in for some challenges, for sure. 

The day went on as usual, except that I now felt alien. I went to pick up the kids from school. The parents  were all there, as usual, making small talk and chit chat. I usually enjoy these moments of interaction with others. One friend had gotten a really short haircut that day and there was a lot of comment on that. I just stood there, smiling on the outside, but inside my head screaming......"I've got cancer! Nothing is going to be the same again!"  It isn't the kind of information bomb you drop with just a few minutes to explain, so I just kept it to myself. I was glad when the bell rang and the kids came out and I could get out of there. 

That night, I made a recipe from my Jillian Michael's cookbook. It was a meatless dish, so I was prepared for a little bit of complaint from the kids. Especially since I used whole wheat pasta rather than white. I ticked down the list of health benefits of the dish that were listed in the recipe. One of them was "anti-cancer." After I said that, Olivier objected, "No one here has cancer!"  Eric and I just looked at each other.  At some point very soon, we were going to have to tell them. We ended up doing that the next day.  

So much has happened since June 11th last year.  The agonizing wait for surgery. The surgery itself. Those awful drains oozing fluid that we had to measure and dump. Having to sleep on my back for months with multiple pillows propping me up. Painkillers and the constipation they caused. Oh my. That was one of the worst mornings of my life! I learned a big lesson--just take the colace!  I thought a high fiber diet was enough, but it wasn't. Then came chemo and the hair loss. The worst part of chemo for me was what it did to me mentally. I just wasn't myself. It really played with my hormones and moods. It played with it so much that I haven't had a menstrual cycle since September. I probably won't have one again. 

sporting my bandaging

In between chemo and radiation, my lymphedema flared up. In a way, the timing was perfect.  Getting it under control meant multiple visits to the physical therapist each week. Luckily, it was December, and I had more than paid my large deductible for the year. I also was able to learn the bandaging and perfect the massage before radiation would start.  Another notable date for me is December 3rd, which was my last chemo infusion. 

After chemo, radiation was pretty easy up until the last 10 days or so. Just going over to Escondido every day was a hassle. But the treatment itself was fast. It's funny to look at my chest now-that radiated side has a strange tan patch that the other side does not.  Fortunately, my lymphedema stayed under control during the radiation treatments. 

I'm lucky to have a breast cancer that is hormone receptor positive. That means I can treat it with Tamoxifen. The drug basically binds to the estrogen receptors on the cells to prevent cancer from growing. I don't like being on medication for a long period of time, but am glad to be able to take something that has shown to prevent the chances of recurrence.  

As my recent posts have shown, I'm also considering my diet and exercise as a type of continuing treatment. Working out is no longer an option for me. Exercise has shown to reduce cancer in many ways, in addition to the other benefits of being in shape. 

It has been a long year in many ways. But when I tick down the list of everything I've gone through, I'm amazed that I was able to get it all done in less than a year. What a year. I re-read this post and in many ways am still in shock that I am talking about ME, and not someone else. 

I'm not sure how I feel today. I'm thankful to have made it through this far. I give God all the glory for that. He has sustained me, strengthened me, and kept me going each day. He has given me wings like eagles to be able to exercise throughout my treatment.  He has made me feel strong, even when I was in the dark days of chemo-induced psychosis. He has surrounded me with an amazing church family who have prayed for me daily. I've been supported by wonderful friends who brought meals over the summer, and sent many wonderful cards of sympathy and support. I've kept every single one. 

As I go forward, I continue my battle. I struggle with fear of recurrence.  The disease may come back, I know. Having cancer in 5 of 15 lymph nodes is not a good thing. But I can't dwell on that. All I can do is live life every day, making good choices about what I put into my body and what I do with it. I want to praise God from the rooftops and help educate others on how to avoid cancer in the first place.  I know that things really aren't under our control--it all is under God's sovereign hand. He is on the throne, I am not. He allowed me to become part of this "club" of breast cancer warrior-survivors. I pray that I am able to use it for His glory. It may be in His plan that the cancer come back. But I know that He has only the best in mind for me, and even if it kills me, I will ultimately be with Him in heaven for eternity. This life, this body, is just a vapor.  But I would like for it to be as long as possible. 

Here is to many more June 11ths. 

I thank you all from the bottom of my heart for all of your support and prayers over the last year. 

Exposed!

I've been going out more and more without a hat, scarf or wig.

I've gotten so many kind comments from everyone about how cute my new 'do looks. How its in style, how I could even play it up more with color, etc. How I've got a "pretty face" and nicely shaped head to pull it off where as others may not.  One lady this morning who didn't know about my cancer commented how she loves her short hair and wouldn't ever grow it out again.  I told her I didn't have much of a choice.  She was sweet about it. Anyway, all the comments are very gracious and nice. It does help me deal with the necessity of going out with the hair I do have.

But I feel exposed. Every time I catch a glimpse of myself in a mirror, or car window, I'm taken aback. On the other hand, that isn't a new thing. Gosh, there have been many times in the past 10 months where I did not even recognize myself at all.

At this point, going back to the wig would be just plain weird.  Hats don't always work with what I'm wearing. I still wear a bandanna to the gym, but you can see sideburns peeking out.

I just have to press on and deal with it.  I remind myself that tomorrow, it will be longer than it was today.

I never considered myself a vain person. I remember going out of the house "BC" barely even brushing my hair. I would just put it up in a clip or combs and be done with it. Now I have to consider drawing eyebrows in so I don't look like a lizard. What about the head? Do I wear a hat? Does it match in style or color to what I'm wearing?  Even when I wear my hair "out" I have to put some gel in it to try and avoid the "rooster" look that it seems to want to do on its own. I probably need to get some shaping around my neck and ears with a buzzer, just so it looks a little cleaner.

And what is up with facial hair??  I've been told that comes with age. (Read: menopause)  It is seriously funny looking around my neck and jawline. Like a thick peach fuzz.  As my hair grows on my head, it is getting thicker.  I'm not sure what to do about that-I want to avoid chemicals, but I really don't want to look like Chewbacca!

On the other hand, going out without a scarf helps me feel like a normal person again. I don't have to "treat" my head, or cover it up. I've earned that "survivor" ribbon that is on the back of my car!  I'm not a walking advertisement for cancer anymore. If you didn't know me, you wouldn't know that I ever had an "issue."

Someone asked me yesterday if I thought I could go on as if I never had cancer. Definitely not. For one thing, I will deal with lymphedema for the rest of my life. That's a daily reminder.  My body has been permanently altered as well. Although we get used to it, the ragged scars remind me if I look. As an aside, I wore my prosthetics the other day and I caught Eric looking at me really strangely.  He just thought it looked weird for me to have breasts again.  I'm not sure if that's a good or bad thing!  There are also the dietary changes that are important for me to fight any recurrence. That is a permanent change. I've come across many who have treated their own cancer through dietary changes alone with success.  If they can beat the disease that way, it will give me the best chances to incorporate those habits into my diet to fight illness-whether it is cancer or something else.  But that is another blog post.

One breast cancer survivor told me that as time goes by, you get more confident about your health. That is probably true. Having normal length hair will help me too.

Meeting NED

I had a follow up with my oncologist, Dr. P, today. It was the first time I'd seen him since the day before my last round of chemotherapy. Since then, I've been through lymphedema and radiation.

Going in, my question was basically....how am I going to KNOW that I'm okay?  Many people have asked me if I'm "in remission," or if I've been "given a clean bill of health." I didn't know what to tell them. I feel good, but then again, I felt good a year ago and had a 3.5 centimeter tumor in my breast!  I have survivor friends who go in periodically for blood tests. Some even have had a post-treatment PET scan. Should I be doing these things? In a way, there would be a level of peace of mind to get a scan and be told that it was "clean."

I dressed for the gym, since I was going there after my appointment. I wore my new shirt from my race yesterday. It's a really nice blue shirt. Not T-shirt material, but like my other workout shirts. Of course, it says "Carlsbad 5000" all over it. When Dr. P walked in, he saw the shirt and asked me if I ran yesterday. He seemed pretty impressed when I told him I did. We had a nice chat about the race, the elite winners (who ran the darn thing in barely over 13 minutes!)  He asked if I was going to do any more races. I mentioned the 3 Day walk in November--60 miles in 3 days!

I had one question for him that I told him I should have asked last July. Exactly what stage was my cancer? He didn't volunteer it back then, and I didn't ask. I was kind of afraid to hear the answer. Besides, I was still going to get the full panel of treatment, so what did it matter? He confirmed for me what I had guessed reading my pathology report-Stage IIIa.

He did a brief physical exam and thought everything looked good. I asked him if any of my supplements could interfere with the tamoxifen. I ran down the list of supplements I'm currently taking: Vitamin D; Vitamin B; biotin; omega 3 fish oil capsules. No problems there. I asked him to order a Vitamin D test to check my levels. They were half of what they should have been last fall. Since then, I've been supplementing a lot and want to know if its helping. He asked me how much D I'm taking. I paused for a second and told him the truth...10,000 a day. He was a bit surprised by that, but didn't tell me to stop, and ordered the test for me.

Then we got into the subject of peace of mind. I mentioned the idea of a PET scan, just to be sure. At this point, he is of the opinion that there isn't any upside to it. My scan last June did not show any metastases. He believes scans show 'incidentalnomas." That's his way of saying false positives. Rather than giving peace of mind, you end up freaking out over nothing. A PET scan isn't going to show the errant cancer cell floating around my body, anyway. Having gone through all of the treatment that I have, he considers that the cancer is gone.  Besides, the radiation exposure of the PET scan isn't healthy if you don't need it. The bottom line was that the costs outweigh the benefits. As for the blood tests, he thought they were a waste of time as well. I forgot exactly why-maybe I'll ask Eric later to refresh my memory.

If I feel any unusual pain in my torso that doesn't go away, I should come see him.

Can I live with that?

I asked him what I should consider myself. Am I in "remission?" He answered immediately, YES. Can I say I have "No Evidence of Disease?" (NED) He said YES. In fact, he said he considered me in remission after my surgery. The chemo, radiation, and hormone therapy is just overkill to make sure it doesn't come back. If I do have errant cancer cells floating around, my immune system and other systems should be able to tackle it. If not and the cancer comes back somewhere else, then it is what it is. Doing a scan now isn't going to change that.

Can I live with that? I could have pushed for a scan, but at some point you just have to live. There are no guarantees in life. Everyone's body is going to die at some point. I just got a preview that mine may go from cancer. Maybe it won't.  It isn't worth obsessing over and exposing myself to even more radiation than I have had already. With the hormonal treatment, exercise, and new way of eating to fight disease, I'm just going to LIVE.  Live with my new friend, NED.

Speaking of the whole death thing, I am so grateful that I know the Lord. Death has been overcome by Jesus and I don't have to fear it. What always made me kind of sad was to imagine my kids and family without me. I was going to be with the Lord because to be absent from the body is to be present with Him. (2 Corinthians 5:8). But it would be sad to have my kids grow up without their mom. But you know, in the end, it is all in God's hands, not mine. I need to trust Him and not lean on my own understanding.

For now, I'm going to focus on living a healthy lifestyle with NED. For you survivors out there, I'm curious about what kind of post-treatment screening or follow up your oncologist does with you. Scans? Bloodwork? Nothing?

Flying

I've been having difficulty sleeping this week due to a cough during the night. I finally gave in 2 nights ago and started taking NyQuil.  (You know, the "coughing, aching, snuffling, sneezing scratchy throat so you can sleep medicine.) That helps, but I still needed to get up at 3 a.m. and take another dose.  The strange thing is that when I'm up during the day, I'm okay.

Even well enough to go to the gym today. I told myself I wasn't gonig to try and time my 5k like I usually do on Saturdays. At first I thought I'd just set the treadmill for 5k and do it at a leisurely pace of 5 mph. Once there, I realized I hadn't run intervals for awhile, so set it for the interval program. For the first time, I ran several of the incline intervals. I saw an article in Women's Health magazine about how you get a better calorie burn by mixing up your running workouts: incorporating speed intervals; hills; etc.

It was great. I had given myself mental "permission" to be kind of lazy, but once there, I just took off. I have a new mix on my iPod for running. There was one point where a TobyMac song came on that is called "Feelin' so Fly."  Mixed with the natural endorphis, it was totally amazing. Some of the words:

You got me feeling so fly 

There ain't a day that goes by 

A supernatural high 

Oh my goodness - people I can't deny 

You got me feeling so fly 

Uh oh, here we go again 

Talking about that thing that so genuine 

Uh huh, gonna make it known 

So a freak like me get his cover blown 

Can't help but glorify my Adonai 

Gotta testify 

Uh oh, here we go again 

Talking bout His love so genuine 

There ain't a day that goes by 

That I'm not singing Your praise 

There ain't a day that goes by 

That I'm not lifting your name 

A supernatural high 

Your love is simply insane 

You got me feeling so fly 

So fly when it's You and I 

And the way we hanging in the morning time 

And it's so dope I can barely cope 

When you make my joy go and overflow 

I can't help but glorify my Adonai 

It's so fly that it's blowing minds 

So fly that they can't deny 

There ain't a day that goes by 

That I'm not singing Your praise 

There ain't a day that goes by 

That I'm not completely amazed 

A supernatural high 

Your love is simply insane 

You got me feeling so fly 

I seriously felt like raising my hands up to the Lord in praise as I ran. Especially when the part of "Can't help but glorify, my Adonai" came up. It was awesome. I'm so thankful to the Lord for giving me strength to continue exercising throughout my treatment.  

In the end, I was on the treadmill for an hour and did a little over 5 mph. Not my fastest pace, but  my heart rate was in the right place and I burned nearly 500 calories. 

I'm having some discomfort in my burn zones. The scar area where they concentrated at the end is the most tender. I'm peeling, but having some stabbing pains in the scar area. I go into see my radiation oncologist this week to make sure everything is okay. I'm sure it is...its just the healing process.

All in this together

If you've been following my blog for awhile, you may remember seeing a "bucket list" of sorts several months ago. Not things to do before I die, but things to do once I was done with cancer treatment.

Radiation ended one week ago today. I'll be on Tamoxifen for at least 2-5 years. Technically, that is considered "treatment," but popping a couple pills every day is a walk in the park. I'm in recovery mode now. My burns still are uncomfortable. The outer layer of skin is in the process of turning dark brown as it dies and then peels away. It leaves a pretty tender layer of pink underneath it. It's onwards and upwards from here.

That brings me to my next challenge. I have committed to participate in the Susan G. Komen 3 Day for the Cure in San Diego this year. My mom has done the same.  My dad volunteered this morning to work all weekend (and the day before the walk) on the crew. This walk was one of those things that I said I would do when I was done.

The walk is a three day, 60 mile journey. I will be in training for several months leading up to it, just to be able to complete the walk. The physical aspect of this is daunting. But I've gone through a lot physically since June, so I know with a lot of work I can do this too.

The point of the whole thing is to raise money for breast cancer research. My mom and I have committed to raising at least $2,300 each. If we don't raise the money on our own, we will have to pay for it ourselves. That may sound like a lot of money. I've had some people kind of wrinkle their nose at the idea of participating because of the seemingly steep fundraising requirement. There are other events that raise awareness with no fundraising goals. So why participate and support the 3-Day?

When it comes down to it, money is needed to fuel research. Awareness is fine, and everyone should learn to do self exams and get screened. But in the end, no cure will be found without the research. Scientists need to be paid. Laboratories need to be stocked. In short, money is needed.

I'm asking you for your support. If any part of my journey has touched you, or made you think, please consider supporting the continuation of my journey with a donation. If you really want to jump into it, you can join my team, "Pink & Plaid Warriors" and walk with us in November. The more the merrier!  Of course, you would also need to commit to raising at least $2,300 to participate. It is going to be an emotional and highly impacting event. I would encourage everyone to check out some of the videos on the 3-Day website.  If all those people on the videos can do this (both physically and fundraising-wise), I can do this. But I need your help.

Right now there are 76 people listed as "followers" of this blog. I know of many more who read it without being listed as a follower. If each follower donated just $15, I would be halfway to my goal.  Small donations add up. Bigger donations take up some of the slack for those who can't donate. How about sponsoring me for a dollar a mile? 

I understand, times are tough. But breast cancer is tough too. Without a cure, one person will die of breast cancer every 13 minutes in the United States. My heart breaks every time I hear of a newly diagnosed person. And I'm hearing it all too often. That's why I'm walking so far. To do something bold about breast cancer. I hope that you'll share this incredible adventure with me - by supporting me in my fundraising efforts.  Many companies match donations that doubles your effectiveness. I'd be happy to check to see if your company (or your spouses) is already on the list of companies that match. You can email me directly to find out. 


I know its a lot to ask. But we are all in this together, and if everyone pitches in, we can make a difference. I would like to have the money raised by my "cancerversary" of June 11, 2011. Then I can focus on training. Please consider helping me out in this by clicking on the picture below.


Blessings to you all!

Burn, baby burn

I've been an ostrich with my head stuck in the sand.  Or a little kid who didn't want to hear something, so she sticks her fingers in her ears, closes her eyes, and says "lalalalalalala!" really loud.  Or maybe just preoccupied with life to really think about the effects of radiation.

Compared to chemo, radiation isn't that bad.  At least not yet. Chemo made me feel like a different person sometimes. It really messed with my hormones and emotions. It fogged my brain.  I couldn't articulate my thoughts and forgot details. It changed my taste buds. It changed my outward appearance in several ways.  Luckily, those effects were temporary and are going away. I feel like myself again. My hair is starting to grow back. My nails still look bad, but I can cover that up with some polish.  Except for the toenails that fall off!  I'll have to wait for them to grow back before I can have normal looking feet again.

So after all of that chemo-drama, I didn't really think a lot about radiation. They said it would make me tired. Okay, maybe.  Chemo gave me some tired days too. So far, I haven't had fatigue, thank you Jesus.  They said my skin would get red, so I should put on creams several times a day.  Starting on day one, I did just that.  I've also been using pure aloe and drinking aloe juice. The redness has come, and continues to grow, both in size and intensity.  And I still have 10 more treatments left.  So it's going to get worse.

A fellow cancer-blogger, Charmine, posted a photo of her radiation burns at their worst for me and gave me some tips on her blog. (Thanks, Charmine!) Yikes. I hadn't thought of blistering, peeling, and oozing burns. But that may happen, especially considering the state I am in now with 10 more treatments to go.

This is what it looks like today, after 22 treatments. The dark red patch under the arm is where I'm putting the pad on that the nurse gave me.  (You also get to see a little bit of my mastectomy scars...lovely, eh?)

I've learned a bit more about "the pad" as well.  It's called Mepilex. It apparently is just a dressing that will soak up ooze from a wound. I asked the nurse about getting more today. She has to order it, but promised not to leave me hanging if I needed it. They have more "samples" in the office.  That's good. Now my question is about moisturizing the area. If the Mepliex is just a dressing, the area isn't getting moisture. She told me to keep it on 24/7 except when showering.  But then the area isn't getting any soothing relief from anywhere. I plan on asking her about this tomorrow. I'm wondering if it would make sense to Aquafor the area up at night and let it soak in, then put the Mepilex on in the morning and for the rest of the day. At this point, there is no broken skin or blisters.  It feels good to have the pad on--it cushions the area and prevents chafing from my upper arm.

I don't want this to slow me down! I don't want to give into cancer. I went to the gym after treatment today and did an hour on the treadmill, alternating between running at a 10 minute mile pace and walking a 15 minute mile pace on an incline. Being paranoid about the chafing, and a little worried that too much sweat would make the pad fall off, I tried to do some of it with my left hand on my hip. It was easy to do while walking, but a little awkward on the running parts. I finished the workout with Jillian's "lean and mean" leg circuit workout. Man, I'm going to be sore. It took me about 20 minutes and consisted of 475 squats/lunges. She said to do the circuit 5 times, and I did. I didn't plan on doing all 5. But once I did 3, I figured I was more than halfway there. I burned 200 calories on that leg workout alone! (A total of 662 for the whole session!)  I may not be able to do upper body and my burn may slow down my running.  In that case, I'll do what I can do! I may not be able to walk tomorrow, though!

Praise report! Another bright spot came today at my physical therapy appointment. My swelling is definitely under control. My upper arm is a whole centimeter smaller than it was on December 22. All of my measurements were either smaller or the same as before. The bandaging is definitely working. I am so thankful that the lymphedema isn't acting up while I am coming to terms with radiation burns!

My prayer requests:

• That my skin not burn any more than it has. If it does, that it be manageable. That I be able to cope with the physical effects of radiation and still live my life. This too, shall pass. 
• That my lymphedema continue to be under control. 
• My friend from church is having her hysterectomy today for uterine cancer. Please pray that the surgery be a success and that the cancer isn't as bad as they initially thought. Pray for her recovery from surgery and strength for the road ahead. 

Make Up

I got a call yesterday (Saturday) from the radiation oncologists office.  The machine was fixed, and the doctor wanted to have me come in today (Sunday) for a treatment.  I was glad to oblige, and was able to squeeze it in before church.  I just left the 3 kids in the car with the DVD running with a Charlie Brown DVD in it. I'm glad we were able to make up for last Friday...so it looks like I'm back on track for the February 17th finish.

Speaking of make up, I've been trying some organic make up. I'm trying a brand called Coastal Classic Creations. It's billed as being "ultra pure."  I'm still getting used to it.  I've been trying some eyeshadow that doubles as an eye liner if you wet the tip of the brush and some mascara.  My first impression is that I like how it looks when it goes on, but it doesn't last like the toxic stuff does.  I tend to find dark shadows under my eyes a few hours later. If I'm not wearing anything on my head, I look like a sick person!  I'm still going to stick with this brand--their products are safely rated according to the Environmental Working Group's safe cosmetics database.

I like to wear makeup on Sunday mornings to church, so I wore the thew organic stuff this morning. I learned something else about it....it definitely is not waterproof! A dear sister that I have gotten to know at the women's bible study over the past few years has been diagnosed with uterine cancer. Her hysterectomy is coming up this week. I was glad to see her this morning and spent some time with her before the service.  She is right at the beginning of the cancer journey and I can so identify with what she is going through. She had questions about chemotherapy and wigs. She has so much to go through.  I've been there, and I know. Even though our cancers are different, there is a lot that is similar. We not only are sisters in Christ, but now we are cancer warriors together.

It broke my heart during the worship time. I glanced over at her and saw she was crying. Just like I did for several Sundays after my diagnosis.  I couldn't both sing and keep it together. I could either listen to the words and maintain my composure, or sing like I wanted to, my voice croaking and crying. I love worship time and love to sing. So I would try, but then the tears would come and roll down my face. Seeing my friend struggling sent me right back there to where I was last June and July. I cried and cried during worship and washed my make up away completely.

The words to the songs we were singing talked about Jesus being the one who saves us from death. That is true, and I believe it with every fiber of my being.  But the concept of "death" is bigger than just this body dying. The soul and spirit are eternal.  That is the part that Jesus has rescued His people from-we won't be eternally separated from God. This present body I have will die, and that is the hard part. It is all we know and we struggle to keep it going.  The apostle Paul likens these bodies to tents. There is something much better to come. "For we know that if our earthly house, this tent, is destroyed, we have a building from God, a house not made with hands, eternal in the heavens." 2 Corinthians 5:1.

I've been pondering the concept of "death" lately. Partially because of my own fear of recurrence. Partially because a fellow cancer blogger, Daria, passed away last week from breast cancer a few days shy of her 50th birthday. Maybe its because there has just seemed to have been such a storm of people being diagnosed with cancer. The specter of death seems to be all around. I just don't want to "go" there mentally, but I can't avoid thinking about it.  It may not be cancer. Maybe it will be old age, or a car accident, or something else. Everybody's body is going to die.  I've just got a preview that my way to go may be cancer.  I hope not.  But God only knows.  But I do have comfort and assurance that when that time does come, I won't cease to exist. I will have just changed addresses. I'll be with the Lord in glory with all of the others who have accepted Jesus as their Savior.

But it still is hard. I just have to trust God each day and put my faith in Him.

Please pray for my friend who is having surgery this week.

Making plans and connecting dots...

I'm in a new phase of my radiation therapy. No longer do they put the pad on my chest to bring the dose closer to the skin. The positions of the machine seemed to be the same to me, but they could have made some adjustments.  Not having the pad should help my skin out, or so they say.  The radiation will go in a little deeper, I suppose.

Today they told me after the treatment they were going to "plan the scar." So I was just supposed to continue lying there while they did it. Whatever--I'm going along for the ride.  Apparently, at the end of radiation, they will spend some time giving my left scar some extra attention with the radiation beams.

Today, after the typical treatment, the techs began to slide in extra plates on the machine above me. It felt like being a bug under glass in a NASA experiment at the international space station. The extra plates made the machine come down to almost my chest. It is really hard to describe what it looked like. I found this picture on the internet that comes close. (That's not me!)  Then I got to wait for my actual doctor to come in. Thankfully, the techs were sensitive enough to take the robe I was laying on and drape it over me so I wasn't exposed like a piece of meat on the table.

I rarely actually see the doctor. Today I passed him in the small hallway as I was arriving and gave him a smile and nod. He just passed by without even noticing that I was there. I was a little miffed by that. Hello!! After a few minutes of lying there, he came in and began to draw dots around my scar. It went all around the scar and he mentioned that he would include my drain scars as well. Then he left. All he said to me was, "How are you today?"  Not like he even listened to the answer.  I could have done the Charlie Brown "waa waa waa waa" and it wouldn't have made a difference.  Maybe he was just having a bad day. I actually liked him the first time I saw him. So I'll give him the benefit of the doubt today and be merciful in my judgment.

After the doctor left, the techs then laid a transparency on top of me and then traced the dots and connected them. They took a picture of it for my file and I was done.  They said I could see the doctor if I had any other questions. I was kind of annoyed by his attitude today so I declined. It all is so technical and complicated, I don't even know where to start with questions! I just am trusting that they know what they are doing and that this is going to help the cancer not to come back.

I do get to wash the marked dots off of me, which is good. There is a small round sticker with a vertical line on it that I am not supposed to remove. It helps them to line me up on the machine each day. They've replaced it once so far.

After radiation, I went to the gym. It was fantastic today.  I did 35 minutes on the elliptical, back up to pre-surgery levels.  Yeah! Then I decided to do 30 minutes of intervals on the treadmill.  A very good friend suggested that a 10 minute mile was a "reasonable" speed.  I had been doing about 11 1/2 minute miles for the 5k. So I decided to do my speed intervals at a 10 minute/mile pace. On the treadmills at the gym, that works out to 6.0 speed. It seemed fast at first, but I was able to do it without my heart rate getting past 90%. I was very glad to see on the slower intervals that my heart rate went back down to about 60%. I have a tendency to not dip back down when I'm doing intervals that are too hard. So this was good news. Maybe I'm getting in better shape.  I would love to do the 5k in 30 minutes or less....so that is going to take some training on my part.

I have a Jillian iPhone app that I experimented with after the cardio session. You can pick a body part and see short videos of Jillian demonstrating exercises and telling you how many to do for each. I chose legs. There were 3 moves: a plie squat in second position where you would rise on your toes at the top; a "curtsey" squat; and a side lunge where you would raise the leg up each time. Okay.  But she wanted me to do 5 sets of each!! Yikes! Not after all the cardio I had done. I did 2 sets and know I'll be feeling it tomorrow!  I just dig all things Jillian!

The workout was great and made me feel really strong.

My prayer requests:

• That I continue tolerating radiation well.  That my skin does not burn to the point that it is too uncomfortable or itchy. So far, it hasn't been bothering me too much, even though it is red and chafed looking. My energy levels remain normal. Many have told me that they got very tired towards the end of their radiation. I hope I can carry on at this current level of activity. 
• That my lymphedema continue to be manageable.  I had physical therapy yesterday and was happy to see that most of my measurements were within the same range as before. There was some slight swelling at the 10 c.m. mark, but it wasn't too bad. It probably had gone down after she did the manual drainage session with me. I'm wearing bandages about 12 hours a day. 
• That I am cancer free.  Someone asked me today if I was. I just don't know.  Maybe the surgery got it all in July?  Maybe the chemo got the rest of it? Maybe we are nuking the stragglers into oblivion?  I just don't know.  I like to think that this radiation is kind of preventative...to help keep it from coming back.  But we just don't know.  I'll blog more later about where to go from here.  But for now, please pray that I am cancer free. 

Rest in peace, Daria

Daria's husband reported today that his wife passed away last night after a long battle with breast cancer. I never met Daria in person but felt a sisterhood with her-bound together by a common fight against a terrible disease. I admired her courage and strength. She blogged daily up until the very end.  While her posts showed that things were not going well, the end came on so suddenly, I am in shock at how sudden her voice is silenced.

I didn't sleep well last night. I wasn't fully awake, but spent a good bit of time in a hazy state of half-sleep/half-awake. I remember several times thinking about Daria in my sleep.  This morning when I woke up, I held her and her family up to the Lord in prayer.

Will you join me?

Heavenly Father, I lift up Daria's family to you now.  Please give them comfort and peace, knowing that their precious Daria is no longer in pain.  I pray that You will make Your presence felt to them as they grieve their loss. Please draw them close to You, and comfort them like no one or nothing else can. You are the God of all comfort, and I pray that You will be glorified in this situation. I also pray that you will comfort all who knew Daria, even those of us who only knew her online.  Give us all Your peace. For those of us who are fighting cancer, I pray that you would give us courage in the face of this loss and remind us every day that You will work this loss out for the good according to Your purposes.  In the name of Jesus, I pray, AMEN

Reality check

I forgot to mention yesterday that I'm trying something new for the burning...aloe.  Internally and externally.

A friend from church who is a breast cancer survivor recommended a juice called "Aloe Gold."  You drink it 1-3 times a day in 2 ounce shots.  It is pretty nasty at first, but I've gotten used to it.  I also bought a couple of aloe plants.  Each day I take a couple inches of aloe leaf in a baggie with me to the radiation office. In the changing room, I split it open with my fingernail and rub it on my ever pinker skin.  I like using the real thing, not some frangranced lotion formula.  The only drawback is that it smells like body odor. Really! It took me a couple days to realize that it wasn't ME that was stinking, but it was the aloe!  (Yes, I shower, but I've been hesitant about deodorant since my diagnosis. Besides, I'm not supposed to use any on the left side anyway.)

I thought I had successfully avoided the radiation doctors' scale this week. But today, they had me step on it. If readers recall, they had me step on it the first Monday after New Years at my first appointment. I was shocked at what it said, even though I knew that I should only pay attention to MY scale, weighing in at the same time each week and all of that. But it did spur me into counting calories and increasing the exercise time.  Today I had dropped 6 pounds according to their scale. I was pretty stoked at that and made a comment about how it was "moving in the right direction."  As I was in the changing room, the tech commented that I shouldn't be "dieting" during treatment.  He said that the treatment calculations were based on me being a particular weight and if I lost too much, the radiation treatment wouldn't be right.  I asked him if I had gone too low. He did a few clicks on his computer that had my record up. He said I had lost 3% of my body weight and that 10% was the limit. But really, he would prefer me not to lose any more at all.  He joked that I could use it as an excuse to go to In and Out Burger every day.

Well, I'm not going to do that! I figure gaining weight would be just as bad as losing too much.  So I'll focus on maintenance rather than losing. Besides, I figure the 6 pounds just reflected weight I put on over the holidays...after the radiation mapping in mid-December.

Daria

So after all that angst over my weight, I came home and decided to catch up on the blogs that I follow.  I was sad to learn that the author of one blog I follow, Daria's "Living With Cancer" had taken a turn for the worse today. She has metastatic breast cancer and had been on a clinical trial after exhausting all of her chemotherapy options. She has been having a lot of problems lately and was very close to being taken out of the trial. Today, her husband came onto the blog to post that she is unable to post to her blog anymore. She is in the hospital in a lot of pain. It doesn't look good.

Hearing the news made all of my issues seem so silly and unimportant. So what if I've gained or lost a few pounds? I'll be honest, it has been hard for me to follow Daria's blog. Early on in my journey, before I knew the extent of my own cancer, I read some bulletin boards where some women with metastatic cancer had posted. It was just way too close to home, and it scared me to death. It still does. That night back in June was one of my darkest. That could be me.  It still could. But even though its hard, I have followed Daria for the past several months. So to find out her condition really is a reality check. Breast cancer can, and does, kill.  I am so sad for Daria and pray for her comfort and peace. I am sad for everyone with advanced cancer. It just stinks. I yearn for the time when there is no disease, no tears, and no death.

Please take some time to pray for Daria and her husband, Don.

Red, green and a little bit of blue Christmas

It is Christmas Day!  Happy birthday, Jesus!  It is so strange to think of where I was a year ago and how much my life has changed since then.

I'm feeling a bit schizophrenic. On the one hand, there have been moments of incredible joy and delight.  On the other hand (the left one), I am fighting feelings of frustration and mild depression.

First some of the joy.  It's Christmas!  Who doesn't love that?  Last night, Jean-Marc was so excited.  We let the kids open one present on Christmas Eve-new pajamas.  The bow from the package somehow ended up on his behind.  As it turned out, he liked it that way. When the stickiness wore off, he wanted the bow back one so we had to get some tape to tape it to his butt!  Then he was doing this funny little happy dance on the floor.  It was a riot!  The older two kids were excited too. They went to bed really early.  Olivier in particular is being very skeptical about Santa and trying to bust the myth about all things Santa.  I keep telling him that Santa doesn't bring presents to unbelievers.

I spent the last 2 days in the kitchen cooking and preparing to cook.  That was why I wasn't able to update the blog.  I made a huge feast for Christmas Eve dinner last night-even down to a homemade apple tart.  It was gorgeous-something you would see in a pâtisserie!  I roasted a free range turkey, made some celery and leek stuffing, tried a new cabbage recipe with chestnuts in it, and added some rutabaga to my mashed yukon gold potatoes. All organic, of course!

I had an extra surprise for the family this year.  I bought a family gift to open yesterday afternoon....the game Twister. I thought it would be something fun for us to do.  It was.  We all took turns falling down and winning.  My brother Jared is a typical Graham.  He is pretty competitive and wants to win.  It's in the blood.  Anyway, I had challenged him to a game after beating the kids.  Boy, he was in it to win it! Rather than putting his hand or foot down on the spot closest to him, he would reach over and get into my space. It was a lot of fun.  At one point, he got a bit over-zealous to beat me to a spot and accidentally kicked my left index finger.  Ouch!  Okay, no biggie. But it was my "bad" hand. It was still fun.

I didn't sleep well last night.  I realized at one point that I hadn't put down Jean-Marc's "big" present.  Where was it??  Even though I thought I knew where I had put it, it was enough to disrupt my sleep.  Eric was another source of sleep disruption.  He came home from France fighting a flu bug and succumbed to it yesterday morning.  So he was moaning and groaning all night. Not his fault, but annoying anyway.  Then at about 5 a.m.,  my left hand felt swollen.  I had worn my compression sleeve/gauntlet to bed, but my hand was definitely bigger than it was the night before.

What the heck?  I was so discouraged and upset.  I did my manual drainage and spent some extra time on my hand.  I couldn't help but cry as I did it.  I felt like I had just taken 2 steps back after having taken 1 step forward.  My hand swelling had gone down by Wednesday.  It was looking better, even though not back to normal.  What caused today's swelling?  I have no idea.  Could it have been the kick in the hand from last night?  Or maybe my body is trying to fight off the illness Eric has.  I don't know.  But it looks like this condition is going to be ever-present with me.  I hate feeling fragile, like a walking eggshell.  I am getting physically stronger every day!  I just passed the 3 week post-chemo mark.  I don't want to be dealing with this for the rest of my life, but it doesn't look like I have a choice.  It makes me more angry than the cancer did.

So having that happen on Christmas morning was a bit of a bummer.  But the kids came in our room at 6:01 a.m. and were so excited, I was able to put it to the back of my mind.  As the day has progressed, my hand looks a little better.  I soaked in a warm tub of bath salts that mysteriously showed up in my stocking.  That felt good.  I wonder if bath salts are good for lymphedema?  Don't my midwife friends tell pregnant women suffering from edema to soak in epsom salts?  (Or something like that).  Regardless, the bath felt good and revived my spirits a bit.

Don't get me wrong, I'm not super-depressed.  I'm just annoyed and frustrated.  Lymphedema is not life threatening.  Cancer was/is.  So I popped my first two tablets of tamoxifen at noon.  Hopefully, I won't have any adverse reactions to that.  I had the scary thought wondering if I would be allergic to that.  What a mental battle this has been and continues to be!

My prayer requests:

• That the swelling go down in my hand/arm.  You wouldn't realized how often you see your hand in the course of the day.  Every time I see it all puffed up, those emotions are churned. Argh!  My body is revolting against me. I still have to do radiation to that area-I need to be able to control that swelling.
• That I do not have any adverse reactions to the tamoxifen. I'm already having night sweats and hot flashes.  Hopefully they don't get too much worse.  I'm pretty sure that I want this menopause thing to be permanent.  Why go through it twice?  In 2 years, they will test my hormone levels to see if I am post-menopausal. I just want to be able to take this drug.  So please pray for no allergic reactions to the drug. 
• That the tamoxifen be effective in preventing recurrence of cancer.  

ENOUGH ALREADY!

Please indulge me for a moment while I whine.

But haven't I had enough already?  I mean, really!  I've sucked it up and then some.  Hello, Tonya.  You have breast cancer that has already spread to your lymph nodes.  You'll have to have chemo.  You'll lose your hair.  What kind of surgery do you want?  Single or double?  Lumpectomy isn't for you--your tumor is too big, and we think there might me another one at 6 o'clock on the left side.  Double?  Okay.  Chop-chop, all gone.  Fine.  Bloody fluid oozing out of tubes coming out of my sides?  Fine. 18 or so inches of ragged scar on my chest where my breasts used to be?  Okay.  They were trying to kill me anyway. I'll do what I have to do. Oh, and by the way-since we took out all your left axillary lymph nodes (they were riddled with cancer anyway), you have an impaired lymph system.  Just don't get cut/blood pressure checked/scratched/poked/burned/scraped on your left hand or arm for the rest of your life.  Might swell up like a balloon.  Alright now, chin up!  Here comes 6 rounds of chemotherapy. Take all these drugs to help you get through it.  You don't want to get sick now.  Fine. I did it.  Followed directions to the letter.  6 rounds of taxotere and cytoxan, done.  Months of baldness, of sideways glances from people-sometimes even my own kids.  Fine.  Half of my eyebrows gone, fine.  Fingernails that are yellowed and sore, fine. Beauty is only skin deep anyway.  Losing some of my physical conditioning--no more push ups for awhile.  Fine.  I'm in treatment anyway.  Chemo-induced menopause, welcome.  Your ovaries are fried from chemo. Night hot-flashes that mess up my sleep.  Fine.  The 2-5 years of tamoxifen was probably going to take me down that road anyway.  Now get ready to be blasted with radiation for 6 1/2 weeks.  You want to do all you can to make sure "it" doesn't come back.  Fine.  A lifetime of living with the specter of "it" coming back.  What choice do I have?  Fine.  I'll suck it up. Other survivors somehow seem to be able to do it, I can too. Fine. 

I've done every single dang thing I was told to do.  Even went to physical therapy "just in case" so I could learn the warning signs of lymphedema.  I did everything right.  

But I got lymphedema anyway.  Insert your preferred expletive here.

It's just not fair.  But life just isn't fair.  Sometimes it sucks.  And right now, I'm pretty ticked off at my arm and hand.  

I sucked it up and wore that uncomfortable sleeve all day and night yesterday.  I did take the top layer off before bed, but it didn't make that much difference.  I took it all off at 6 a.m. this morning.  My arm looked better, but my hand did not look like my own.  It looked like someone had replaced it with a surgical glove that they had puffed air into and tied at the wrist.  I spent over 30 minutes doing manual lymphatic massage to try and get it down.  I kept my compression sleeve/gauntlet off for an hour or so to see if it my hand would go down.  After breakfast, it did seem to be better.  Not great, but better.  

So I put the sleeve/gauntlet back on.  (I need to come up with a shorthand name for it).  The two younger kids and I went out for a few hours to shop. Olivier was at an all day boy scout leadership training session. We had a great time at the Vista Farmer's Market and went to the mall to do some Christmas shopping.  Isabelle's riding lesson was canceled because of the rain, and she loves "the mall."  In the middle of the expedition, I looked down at my gauntlet-clad hand and the puffiness was spilling out over the top.  I took the gauntlet off, and my hand had swollen up even worse than in the morning.  I even wondered, how far can my skin stretch?  It was awful.  Could the sleeve be actually trapping or forcing fluid into my hands?? What will happen if I keep them off?  Will my arm swell up again?  

I still don't know the answer.  Right now, I've had them off for about 3 hours.  My hand is down. I'm going to work out later and do some more manual drainage.  I'll really examine the arm then to see.   It seems to be a little swollen, but maybe its the angle.  I need to get in front of a mirror and really see what's going on.  

Why can't this just go away already?  Whine, whine, whine.  Stamping my feet.  I've done everything I was supposed to do!  I'm still doing everything I'm supposed to be doing.  Well, except wearing the sleeve right now.  But my hand was a freak show and I panicked.  

I'm also really frustrated that this is happening right before Christmas.  I want to enjoy the holidays.  Chemo is over, man!  I wanted to really celebrate this year. But I can't.  Because I'm freaking out about my hand and arm.  I feel like I'm being cheated out of my Christmas.  It sucks, and I'm mad as heck about it.  I want to be carefree and happy, enjoying the season with my family.  They've been through a lot too.  They deserve to have me present and available to them.  I don't feel like I am right now.  My mind is in a twist about this stupid lymphedema.  They are being ripped off too, and its not fair to them.

ENOUGH ALREADY!!  

Please pray for my arm and hand.  That this lymphedema go away.  That my physical therapist and I have wisdom about how to treat the condition if its God's will that I deal with it.  That I be able to put all of my worry and angst in a mental box and put it away for periods of time so I can spend time with my kids and have holiday fun.  

Falling apart

When it rains, it pours.

The hives were definitely from the Cipro.  I spent Friday afternoon and evening watching my entire body turn into a red, swollen hive.  I was taking 1 benadryl, hardly able to go 4 hours in between doses.  By the evening, my stomach was cramping up.  I don't know if it was from the benadryl, or the anxiety.  Before I went to bed, I noticed my left wrist kind of swelling up.  (Uh oh...lymphedma!)  I put my compression sleeve and gauntlet on before I went to bed.

Before getting into bed, I prayed for deliverance.  Literally crying out to God for relief.  I didn't sleep very well the first 3 hours.  At 1:30 a.m., I took another benadryl, which knocked me out until the morning.  When I woke up, my left hand was puffed up like a balloon.  My fingers that stick out of the gauntlet were like swollen sausages.  The hives seem to have triggered lymphedema.  I jumped out of bed and did my manual lymphatic drainage as well as some lymph exercises to try and get the lymph fluid to drain out of the hand and arm.

Eric left for France the day before, so I had to take the dog for a walk.  The benadryl made it really difficult to do-I was so wiped out.  To add to the drama I had to deal with, Jean-Marc decided the night before that peeing in his pants was going to be just fine.  He did it about 4 times over Friday night and Saturday morning.  Why do kids pick the time when you are least able to cope to do silly stuff?

On Saturday morning, I had to take Isabelle to her riding lesson today, which is on the other side of town.  Jean-Marc and I went to the park while she rode.  All morning, the hives were driving me insane.  Seriously insane.  I couldn't help but scratch.  Once I started, I couldn't stop.  It was maddening.  Words can't even describe how I was feeling during these episodes. My legs, stomach and chest were on fire.   When I got home, I soaked in an Aveeno bath.  That helped relieve the itch, but after about 45 minutes, I got cold.  I was good after that for about a half an hour, then I took another benadryl.

After I got out of the bath, I went downstairs to cut out Christmas cookies with Isabelle. (Trying to keep things normal for the kids.)  I opened my mouth to say something, and my voice was a croak.  I didn't think much of it at first, but then remembered something one of my Aunts had said on Facebook about one of her own allergic reactions to medication: anaphylactic shock.  When my mom came over later on, she had the same concern.   She asked how many benadryl I had been taking.  When my dad was having reactions to bee stings, he would take more than one.  So I took one more and we called the Kaiser nurse advice line to see how many I could take safely.  Mom did the talking for me, since I still had no voice.  They told her they would call back.  Meanwhile, the itch had come back and was driving me crazy. I had hives on top of hives.  Mom put some 1% hydrocortisone cream on my legs to try to assuage the itch and my legs looked like pink cottage cheese. We decided to go to Kaiser's urgent care.  Maybe they could just give me an epi shot or something.

We got there around 4:30 p.m., but by the time we found where to go, it was about 4:45 p.m.  I was in black sweats, a zebra bandana on my head an no makeup.  Full-on cancer patient look.  By then I wasn't  feeling as itchy since the second benadryl had kicked in, and some of the hives had faded a little.  But my voice was still bad.  The receptionist asked if I had an appointment and I said no. (Isn't that the point of urgent care?)  She got the nurse to come and have a look at me.  The nurse took us back and took my vitals.  I explained the situation to her and she went to "ask the doctor to see what they could do for me."  She came back and said I should go to Palomar Hospital's ER because they were going to be closing in 10 minutes.

Excuse me??  The doctor didn't even come and look at me!  They still had 10 minutes!  They are going to send someone a week out of chemo with low white blood cell counts to a hospital ER?  A cesspool of germs?? To sit for hours before being seen?  I explained this to the nurse, but she said there was nothing she could do.  I should have come in earlier.  Well, we tried calling and were waiting for a call back that didn't come by 4 p.m.  Yeah, thanks for nothing.  I called Palomar's ER to see how long the wait would be, since Kaiser was kicking me out.  I was told 3-4 hours.  No way.  I'm immune depressed right now.

We went back and asked the receptionist to see the nurse one more time. I still needed to know how many benadryl I could take safely.  The nurse said she wasn't "qualified" to answer the question.  I said, well, maybe you could go and ask the doctor?  Or perhaps there is a topical cream that he could prescribe that would help get me through the night?  The receptionist and nurse started whispering to each other and the receptionist got on the phone.

I just stood there, in shock and dismay.  Seriously.  I've been through so much in the past 6 months and have sucked a lot up.  I'm not a complainer.  Here I am, in need of some help, and because some jerk doctor wants to walk out the door at 5, I'm being told to risk my health by sitting in an ER for 4 hours??  Amputating my breasts, 6 rounds of chemo, drugs up the wazoo, and some idiot doctor won't risk staying a few minutes late to see me?

I decided not to suck it up any longer.  They may send me away, but they are going to know how they are making me feel.  They may send me away, but if they have an ounce of heart, they are going to feel like crap doing it.  I let the tears roll down my face.  Who cares?  They certainly don't.   Of course, that made my mom cry.  So there we were, crying in their faces while they were on the phone.  Then they handed the phone to me...apparently, they called an advice nurse down in San Diego.

The advice nurse asked me the same questions about my situation.  Where was the rash?  Head to toe, literally. Because of that, she said a topical cream wouldn't really be an option.  How bad was the itch?  On a scale of 1 to 10, its an 11 or 12.  Off the charts.  Could I breathe?  Well, yes.  But at times, I would have some shortness of breath.  But that could be from the insane itch.  That was their main concern-that my throat would close up and I wouldn't be able to breathe.  She said it sounded like I needed a steroid shot, and my options to get that on a Saturday night were to go to the ER, or drive down to Mission Valley to another Kaiser facility.  I seriously did not want to do either.   I would live with the itch until the morning, when they could give me an appointment.  At that point, the benadryl was fully in my system and it was manageable.  The nurse said I could take 2 Claritin on top of the benadryl, which I could take 2 every 6 hours.  That should get me through the night.

We got home and ordered pizza for dinner.  I had food I could make, but just didn't have the energy to do it.  Besides, the kids would like it and we could turn the situation of having grandma and grandpa over to have a little fun.  We put "A Christmas Story" on the TV and tried to make the most of it.  My mom decided to spend the night just in case I had an emergency.  We set her up in Isabelle's bottom bunk.  Isabelle was stoked to have a sleepover with Grandma.

Before I went to bed, I fully dosed up on the Claritin and benadryl.  The rash had been moving around.  At that point, it was spreading onto my neck, face and head. I did my lymphatic massage and exercises, trying to get the swelling to go down.  Then I got down on my knees and prayed to God for help. I didn't have a lot to say, just help.  Help these hives go away.  Help the swelling to go down.  Help me to be able to sleep.  I was so messed up, I didn't know what else I needed.  Just help.

Thank the Lord, He did answer that prayer.  I woke up 9 hours later, and had a good night of sleep.  I figured I would be up around 3 a.m. to take more medicine, but I didn't need to.  I still had rash on my head and face, but the itch wasn't insane.  There were still spots other places too, but it was manageable.

Considering I was improved, even though not fully healed, do I keep the 9 a.m. appointment?  I knew if I went in there in my improved condititon, I would feel a little bit like Chicken Little.  I was pretty sure the doctor I had the appointment with was the same one who caused me so much angst the night before.  I didn't want to show up all better and not really needing to see him.  I did last night, but this morning was a different story.  I decided rather than going to Kaiser, I would go to church instead.  At the beginning of my treatment, I had told myself I didn't want to miss a day of church because of my treatment.  I did miss 2 Sundays, but it was for the "Making Strides Against Breast Cancer" walk and the Charger game when I was one of their "Survivors."  This would have been the first.  Screw cancer!  I popped 2 benadryl and went to church.

I'm pretty sure I'm on the mend.  I noticed on my phone today that I had a voice mail from Dr. P, my oncologist. He left it last night.  He told me that if my rash was still bad at my 9 a.m. appointment, they would prescribe me prednisone, a pretty heavy steroid.  I could take some of the medication that I took around chemo time if I had some left (I do).  It's also a steroid.  I was glad to see that he called, particularly on a Saturday night.  That's a far cry better than the urgent care doctor.   At this point, I'm not going to take the steroid.  My left arm is still swollen and I am concerned about it.  I'm going to call the physical therapist tomorrow morning and see if I can get in to see her as soon as possible.  I'll keep doing the lymphatic massage and exercises in the meantime.  I did a quick 30 minute cardio workout, and my legs felt like lead. But I did get a sweat on and that made me feel better.

I would say that the last few days definitely were among the worst of the last 6 months.  It was a little bit like the straw that broke the camel's back when I wasn't able to be seen by a doctor last night.  My body has been through so much over the past few months, I just felt like I was literally falling apart. Today, after a night of sleep, I feel much better.

My prayer requests:

• That the swelling in my left arm go down.  I'm a bit swollen everywhere, so I'm hoping that the left arm and hand will go down when everything else does. But it is more swollen than the right, and I know I'm compromised on that side. 
• That the hives continue to fade.
• That I be able to manage the house, kids, and their activities this week while Eric is gone.  That I be able to do it with grace and love.  I need a big dose of the Holy Spirit!